One in 1 Hundred. Living, loving and learning more every day from our child with a congenital heart defect (CHD). We share our stories here in hopes that they will help you along your own journey. CHD Blog, TGA, ASD, VSD, Pulmonary stenosis,COARC,artery stretching surgery.
Kristen Tragethon.

WHAT'S IN A NAME

The One in 1 Hundred comes from the statistic – the number of babies born with a congenital heart defect every year. When you are pregnant you hear a lot of statistics and they don’t really hold any true meaning to you personally until you become that 1 out of 100 and your life is forever changed. Once you are that 1, I don’t think you ever look at statistics quite the same again. Kalvin has not only touched my heart, he has kissed my soul. He has changed me for the better in ways I didn't know existed and for that I am truly blessed. I tried to explain this to a pregnant heart mom and I don't think she quite understood until her heart baby touched her very own soul. Here in this blog, I will try and share with you all our experiences and it is my hope that they will help and or provide you with some comfort. Thank you for listening.

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The Perfect Ending

One Hundred Laps on the One Hundredth Day of School

Run my dear,

From anything

That may not strengthen

Your precious budding wings.

Hafiz

It was going to be the perfect ending to Congenital Heart Awareness Week.
Kalvin’s class was running one hundred laps around their gym on the hundredth day of school. I couldn’t have written the script any better, one hundred laps for our
very own one in 1 hundred and it was Valentine's Day to boot. What better way to
celebrate hearts.

What better way to spread awareness.

Running one hundred laps on the hundredth day of school is an elementary
school tradition in our town that goes back at least twenty years. No
fundraising involved, just a pure sense of pride and accomplishment for these
second graders. They start training in kindergarten and work up to one hundred
times around the gym or 3.5 miles!!! What an accomplishment for any second
grader, but for one with severe pulmonary stenosis and multiple CHDs, well that
is just amazing. And that is what I fully intended this post to be all about. Until that wasn't
the real part of the story for me anymore.

I decided that morning that I, myself, could not put off exercising one more
day. If Kalvin was running 3.5 miles, than surely I could too. I headed down to
the basement to run/walk my own 3.5 miles on my treadmill. A treadmill that has
been collecting dust and storing toys for the last few years. But that is a story for a post all of its own.

It was an
emotional workout. I tried to stay motivated by picturing Kalvin running around
the gym. He had worked so hard preparing for this day. And the training had
presented some challenging moments for Kalvin; including one bullying incident.
I wiped away the tears as I trotted along on my treadmill thinking how hard
this was going to be for Kal to accomplish. Praying it would all work out. That
he would finish. That his face would beam with pride in the end. I thought about how
proud I was of Kalvin and all that he has accomplished in his eight years as I continued wiping away the tears and moving my feet.

I plotted in my head what I was going to say to the other mothers while we
watched the kids run around the gym. One hundred times. It was the perfect way
to spread CHD awareness. The perfect time to share Kalvin's story. I was so excited to explain all about CHDs.

I would brag about my boy who is functioning with
a little more than one lung and multiple CHDs. I wouldn't even go into the facts about his
one leg being shorter and having much less muscle mass than the other. No, I
would just share Kalvin's heart story and let them know all the facts. I was ready to field their questions. It would be the
perfect ending.

Then, like so many times before, as I sat down to share the fun part of our day. I was planning to write all about Kalvin's running game (as Finn calls it) until I realized that wasn't the story that was really on my mind. That was the fun part of the day, but not the part that was nagging at me.

It was suppose to be the perfect ending, the perfect way to
wrap up Congenital Heart Awareness Week 2014. Right? I would share some facts and tell all the moms and dads about Kalvin's heart and lungs. I would share our story. But as I stood there with
the other mother's watching our children run around the gym, that old familiar feeling washed over me. That need for
Kalvin blend in. For Kalvin to be known as Kalvin, and not by his CHDs.

I just couldn't get the
words out of my mouth. I so wanted to share all that Kalvin has endured. How these heart babies go through so much. How Kalvin has been through so much. So much more than any kid should have to go through. And most of all, how these babies can thrive and live a regular life. But I didn't have the courage to say it.

I wasn't sure that they
would really listen.

I could picture their looks.

The fear that they would think
I did something wrong to cause this to happen to my baby crept into my mind. It
is still there. Even though I know, I know, I did nothing wrong. There are no guarantees.

Even as I held
his brother up to the window to peak down on the runners, and he asked me why
Kalvin was so far apart from some of the other runners, all I could manage to
squeak out was, "He is doing the best he can. That is all any of us can
do."

Oh, I wanted to shout out, "Your brother, my son, basically ONLY has
ONE lung. Do you realize what that boy has been through? What that boy goes
through?"

But I could not find my voice.

And I am not completely sure why.

I wanted this post to be all about Kalvin and his amazing run, but I fear
the situation I found myself in is far too common. I fear it is one of the reasons CHD awareness is still
so limited. So I wanted to share the real part of my story and see if any other heart mom's out there find themselves feeling this way?

I remember bringing Kalvin home from the hospital. The nurses and
doctors encouraging us to take him home and treat him like any other normal baby. But he
wasn't a normal baby. He had just had a ten hour open heart surgery sixteen
days earlier. Sixteen days earlier.

You couldn't pick him up like a
regular baby. He could not afford to lose any more weight or we would be back in
the hospital. And he ate like a bird. A few ounces at a time was considered a
good feeding.

His chest was held together with large black stiches that
stretched down the entire length of his torso.

He couldn't go into public places. He
couldn't be around children or anyone who might be sick.

What we had just been
through was not normal. But we were told to move forward and pretend everything
was normal.

And we tried. The best that we could. We tried.

I guess this is what I struggle with today. We want Kalvin blend in
and be a “regular” kid, because that is what he really wants. To be
accepted for who he is. To fit in.

He does not like people to know about his
heart.

He doesn’t like to be singled out because of his heart.

And he shouldn't be. He is just a regular kid, doing regular things.

I don't ever want him to be embarrassed or ashamed of his heart. Of his situation. To feel like an outcast. Those are the thoughts that keeps me up at night. That drives me to spread awareness. I want people to know about congenital heart defects so that they will understand them. So that no baby will leave the hospital undiagnosed.

As I stood there watching the run, I could feel myself getting numb. Numb to the feelings that were beginning to creep in. Those feelings of that scared momma in her apartment with her twenty one day old baby, pretending everything was normal. Pretending.

I stood there pretending this was just another regular event for a regular kid. Part of me wanted to scream. To jump with joy. To yell from the roof top, "Look at my boy. He had complex open heart surgery when he was five days old. He has little more than one functioning lung. Would you just look at him now. Look at him now."

I wanted to be the one waving the flags and shaking the banners right there with the gym teacher.

But instead I just pretended it was all regular stuff. Pretty amazing regular stuff.

And I guess in the end, it all works out the way it was meant to.

I thought the day was going to go a different way, that I was going to be spreading awareness and yelling from the roof top as my heart baby ran 3.5 miles.

5 comments:

Kristen, *I* cried just reading this! I would have definitely cried watching him. Congrats to you both on this beautiful, symbolic milestone. I was touched and learned so much from the conflicting desires you shared in this post. And as a mama who hasn't been through the heavy things you and other moms have been through, I appreciate hearing your thoughts so that I can be more sensitive to other moms and children around me. Best wishes, girl!

Hi my name is Caryn Johnson and I found you on Little Miggy Stayed Home:Special Needs Spotlight. I wanted to get in touch with you because I also was born with heart defects and had VSD/Tetralogy of Fallot surgery when I was nine months old. If you want to contact me my email is maijarose09@yahoo.com or Facebook is Caryn E. Johnson/

This is so so beautiful and so on point with my thoughts for the future for my own son For how I deal with CHD awareness ... Wanting the normalcy for my son and at the same time knowing how exceptional he is beyond the norm and wanting to share that with the world. Thank you for your blog and putting it into words I am glad that I stumbled upon it .

This is so so beautiful and so on point with my thoughts for the future for my own son For how I deal with CHD awareness ... Wanting the normalcy for my son and at the same time knowing how exceptional he is beyond the norm and wanting to share that with the world. Thank you for your blog and putting it into words I am glad that I stumbled upon it .

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BROTHERS

OUR MIRACLES

Kalvin was born with d-transposition of the great arteries (TGA), VSD, Coarctation of the Aorta (COA), pulmonary stenosis. Kalvin underwent 8 hours of by-pass surgery to correct his defects when he was 5 days old at Children's Hospital Boston. Kalvin has had two catheterizations to correcton his COA; one at 3 months old and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1 cm shorter than his right and also has less muscle mass. Kalvin has received PT since he was 4 years old to help his coordination and OT to help his delayed fine motor skills. Kalvin also suffers from anxiety and has from a very young age. Kalvin is a well adjusted happy boy who doesn't slow down. He loves boating, beaches, baseball (Red Sox & Indians), football (OSU & Patriots), hockey (Rangers & Bruins), soccer and dancing to music. Kalvin is extremely active participating in baseball, soccer, karate, swimming, skiing, skating and piano lessons. The role Kalvin takes most seriously is that of a big brother. When Kalvin was five years old we were finally blessed with another baby boy, Finn (heart healthy). Finn is a miracle all his own. Finn is full of spunk and makes us all laugh on a daily basis. Kalvin is always looking out for Finn and trying to engage him in play. They are truly the best "medicine" for each other.

Thanks for Stopping by

Most that know me, know I love to talk about my children and most know that Kalvin, my 7 year old, had heart surgery when he was a baby, but that is probably all they know about Kalvin's heart. Once Kalvin entered school, I found myself explaining to the teachers and administrators that Kalvin's struggles were most likely a result of 8 hours of bypass surgery at 5 days old. Recently, I was introduced to some other "heart moms" and we began sharing stories and I found myself reliving Kalvin's surgery and all the experiences that came with it. It was amazing to me how far back in my mind I had actually tucked away many of the experiences, but how easily someone else's words could transport me instantly back to a certain place and time. I found it somewhat comforting to share the stories and relive the experiences and it seemed to help the other "heart moms" as well. I was sharing information, links, and pictures I had gathered and thought, "Why not put this all in one location and maybe help some families that I dont know or haven't met yet." And thus began One in 1 Hundred.